Arianna's Wings

Raising funds for families who have children with medical needS

Story told by Kinzingtyn's parents.

Kinzingtyn Angel is a joyful, strong-willed warrior princess that fights for her life every day. Facing rare and still unknown medical conditions, she starts each day with the brightest smile and fills the air with her sweet words. Doctors, odds, and diagnoses like Lissencephaly or smooth brain, are stacked against her, but her joyous spirit never shows it. She was not expected to show emotion, sit, talk, or even play with toys.

Her struggles began almost immediately after birth when she threw her first curveball that no one was prepared for. At less than 24 hours old, she was rushed to U of C. At only 33 hours old, she was in the OR for emergency, exploratory stomach surgery and again at just 10 days old. After 30 days in the NICU, her unstoppable seizures, feeding issues, countless medications, extended hospital admissions, therapies, and doctors appointments became our new normal. At 72 days old, she underwent a radical brain surgery in attempt to stop her constant seizures. She still battles seizures daily, but the surgery gave us the ability to help stop them with rescue medication.

Kinzingtyn’s journey is a unique and difficult road; she has no full medical diagnosis as to what caused all of her health complications. Doctors say she has a form of a gene migration issue that occurred as she first developed in the womb. Some of her known conditions are: epilepsy; legally blind; GI and motility complications; fed via G-tube; left side underdevelopment; severe sleep apnea; immunocompromised; cerebral palsy; and glaucoma. She can sit and “scoot” on her own; then uses a wheel chair for full mobility; gait trainer to learn to walk; and stander for strength.

To date, Kinzingtyn has had 11 eye surgeries, 5 GI surgeries, 1 brain surgery, and 2,000+ hours of recorded VEEG data on her seizures. She is scheduled to have her 18th surgery in May. She will have many more surgeries and procedures to help her develop as she grows. Today, she is thriving and surpassing goals they once told us were likely impossible. She may not follow any textbook and what her future holds is unknown, but each day, she writes her own, new miraculous page and is sure to keep everyone on their toes with her curveballs.

To give Kinzingtyn a safe, healthy, and thriving life, she will require 24/7 monitoring, care, and assistance the rest of her life. Therapy in home and at centers are a must for her. The typical school environment is a dangerous place for her due to her medical fragility. If someone has a simple cold, it can put her in the hospital for an extended stay. She is incapable of coughing on her own, thus, any sickness can be life-threatening. Seizures, falling, vomiting, aspiration, and apnea require continuous care and close observation. Currently, in place of a nurse and due to her unique challenges, she requires both mom and dad to be home tending to her needs around the clock. Private therapies and home nursing are very costly, and her vital medical equipment like cough machines and shower chairs cost even more. As she grows, her family will need to invest in these services, a wheelchair van, and finding their own home that can be made handicap accessible to allow Kinzingtyn the freedom of life that she needs and deserves.